Hi everyone. My name is Parmida and I’m going to talk briefly about my own experiences with having a cleft lip and palate.
I was born with a bilateral cleft lip and palate.
I had my first surgery when I was just two months old.
There aren't a lot of pictures of me before my first surgery –
– because my parents didn’t want me to tell me that I was born with a condition until I was older to understand it
Over the course of my 22 years of life, I have had 11 surgeries.
This has caused my face to change a number of times.
I first realized that I looked different when I started school and a classmates came up to me and asked me “why I looked like that?”.
and I didn't know the answer, so I would ask my parents and I would ask them a number of times, until I was 10.
They gave me a different answer each time. And when I was 10, they finally told me and thats also coincidentally when people started being mean about me looking the way I do
One incident I remember was when we had gone out shopping and a boy who was passing by pointed at me and said: “Oh my god, Look at that girl! She’s look so ugly”.
it hurt a lot at that time but overtime I've learned how to manage and cope with the negative feelings
that comes with having a cleft lip and palate and I believe that it is a very important topic to discuss
So in this video, we will talk about the psychological impacts of a cleft lip and palate on the patient and on the parents or guardians, as well as some ways to minimize negative feelings that comes with having this congenital disorder.
a cleft lip or palate happens when a baby is born with an opening in the upper lip or the roof of the mouth – which is the palate.
A baby with a cleft may have only a cleft lip, only a cleft palate, or both.
clefts can vary in size and location a cleft palate leaves a hole between the nose and the mouth this space may just be in the back of the palate which is the soft palate or extend just behind the gums which is the hard palate
a cleft lip presents as a gap or opening in the upper lip
this cleft may be just one one side which is unilateral which is more common or on both sides which is called bilateral
furthermore the cleft may appear as a small notch in the lip which is called an incomplete cleft lip. Other clefts can extend into the nostril which is called a complete cleft lip.
Along with all the difficulties that arise due to physical deformities, cleft lip and palate also known as CLP, has a huge psychological impact not only on the patient, but on the family as well.
Patients have to face bullying in school
and parents have to figure out suitable coping strategies that allow them to calm themselves and support their child
a study showed that 69% of patients reported having suffered from taunting and peer victimization in school
50% of patients reported sadness, 31% reported depression
and 26.3% were marked for life
Teasing started in primary school and reached a peak of aggressiveness in middle school
and occurred at least once a day, due to which CLP patients didn’t want to attend school.
47% of patients reported that they wanted to change something on their face.
A study showed that the environment and surrounding community has a great impact on parent’s during their coping journey.
Having more support from friends and family was associated with less negative family impact, lower psychological distress, and better adjustment.
One the other hand, "Avoidant coping", was associated with a greater family impact and more psychological distress.
Taking all of this information into consideration, many of you may be thinking “so how can we be part of the solution?”
Well there are many effective ways to do this, let’s look at it from two different perspectives.
The first is targeted towards parents or guardians who are taking care of a child with a cleft lip and palate
Being more proactive and keeping the school up to date about your child’s situation can go a very long way.
An easy way to do this is by informing the school about future absences due to upcoming appointments or surgeries.
By doing so, teachers will be able to better accommodate your child and allow them to have a better school experience.
On top of that, providing additional support outside of school is also very important.
Your child may feel like they are different from other children and may have some trouble with their self-esteem.
This is why it is important for parents or guardians to provide emotional, physical and psychological support during these times.
It is also a good idea to celebrate your child’s achievements to help boost their self-esteem
Now let’s move on and talk about what the general public can do to help.
Educating the public, particularly children about cleft lip and palate is a great way to help prevent teasing or bullying
Parents, teachers and peers should educate children about cleft lip and palate, so that they have a better understanding about what it is and how to appropriately interact with affected individuals
Adding to that, it is also very important to ask questions and take part in discussions to ensure that children with a cleft lip and palate are not bombarded with various questions that may make them feel insecure or uncomfortable.
On a larger spectrum, spreading awareness is known to be a powerful method of encouraging visibility within the community
By distributing knowledge and promoting various organizations, we can minimize public ignorance and ensure that children with a cleft lip and palate are experiencing the same opportunities as everyone else.
22 years laters, after 11 years of speech and psychological therapy. I have began to accept my face the way that it is.
A couple of years ago, I had the option to remove the scars above my life, but I declined.
because I have realized that the scars above my lips are a part of my identity now
They show that I have gotten to be on a journey that not a lot of other people have been on and I'm quite proud of that
When I was younger, I used to be very self-conscious about the way I talked
and I didn't socialize a lot because of it
But now I'm in 4th year at McMaster University, I do quite well in classes, I have no trouble talking with my peers
I have a lot of friends and I am the President of a recreational club, where all I have to do is talk
Thank you for listening to my story!